Tuesday 30 August 2016

Autism and Females: "You can't be autistic because..."

Very good to see so many colleagues talking on media about autism and females.
The difficulties getting a diagnosis, in particular.  I've been glad to be a speaker at many conferences and events around gender, and often talking about autistic females.  Vital that we raise the profile of all the groups who are not yet fully visible, together.

"You can't be autistic because...."

Most of us with a later diagnosis will have heard so many variations on this.
"You can't be autistic because you're female."  But probably half of those on the autism spectrum are not male.  So many miss out on diagnosis because of the myths.

"You can't be autistic because you have friends".  Autistic people have difficulty befriending non-autistic people, and vice-versa.  We generally do not have the same difficulties befriending autistic people. 

"You can't be autistic because you dress well and wear makeup".  Goodness me, there's nothing in the diagnostic list to suggest females have to look a certain way.  Sensory needs, routine needs and difficulties with co-ordination might impact on how females are able to dress.  But every person is an individual. 

"You can't be autistic because you are married/in a long term relationship".   Quite a few are married to autistic people, and it can work wonderfully well.  It can also work with a relationship with non-autistic people, if both are aware of differences and respectful of those.  Some are in very unhappy relationships with narcissists, sociopaths and general nightmare-people, who have taken advantage of the autistic partner.  That's not a sign of successful 'non-autism'.

"You can't be autistic because you have children".  Another myth.  I know so many fantastic mums.  And dads, of course. And parents who identify as non-binary.  But as this post is about females, I'll say that there is such depth of caring, such passion for getting it right and bringing up wonderful young people.  Our own son is now an autism consultant with a degree in Psychology and Counselling.  And is autistic.  Autism was not a barrier to me as a parent.  It was an advantage.

"You can't be autistic because you can make eye contact".  I can pretend to.  Many autistic people can.  Actually looking into eyes is intensely painful.  Literally.  And exhausting.   That we force autistic children to do it, so others feel OK, is quite awful.  We need to stop

"You can't be autistic because you aren't interested in trains"

No, really, I've had this one.

Autistic women/non-binary women may indeed have female fascinations and passionate interests. So might autistic males.  It's the depth of that fascination, and the way that they collect and arrange the things, that is the giveaway.  300 books on horses?  150 handbags?  I generalise.    I'm saying that collections and intense fascinations just don't have to be about vehicles, trains , computers or stamps.  Honest they don't.

Endless myths.

I am so honoured to know so many wonderful autistic people.  As friends, as colleagues. 
The quiet ones.
The loving ones.
The caring ones
The determined ones.
The passionate ones.
The creative ones.
The extravert ones.
The ones from different cultures, backgrounds, faiths, ethnicities, social and financial circumstances.
The ones who are different ages, perhaps tackling puberty, menopause, older age.

Each made in excellent and unique ways.

Each with their own accounts of the exhaustion of trying to get a diagnosis.  Of trying to get basic support for sensory, social and routine-based needs that go with autism.  And of repeatedly being ignored, because they are 'too good' at appearing non-autistic.  At masking, disguising their autism.  Or, who have found professionals who simply weren't looking for autism, because 'it's just boys, isn't it'. No, it's not.

What is it with the myth that one can see autism just by looking?

Are autistic people supposed to dress in the international autism symbol each day?  Sort of a joke.  But sort of not. "You don't look autistic" just means, "I don't feel uncomfortable around you".  That's not a diagnostic criteria.  That's the other person's individual reaction to the word autism.  The difficulty is that those of us who 'don't look autistic' get no support.  It's as bizarre as going up to someone who is Blind and saying, "Well you don't look blind", and so refusing to help them.

We are indeed all people, all loved.  And we deserve a life that is not one long fight for basic needs and basic understanding.

Sunday 28 August 2016

Autism: Neurodiversity versus "Mental Illness"

Quite often, I'll say to someone, "What are you doing about autism inclusion in your group?", and they will respond by saying, "Our mental health team is doing fantastic work?"

It's very good that people have a mental health team.  It's very good that they are doing fantastic work.  But, that's not autism.

It's a bit like asking, "What does your group do about women's rights?" and being told, "We have a wonderful mental health team".   Would that feel comfortable?  Stop for a moment, if you will, and consider how a woman would feel if that was your first response to her.  Yes, some women have mental health difficulties.  Some men do.  But being a woman is not a mental health condition.

Being autistic is not a mental health condition, or a disease.  It's a neurodiversity.  We are born autistic.  We die autistic.  We're autistic all of the time.

Neurodiversity is quite a new word for a number of people.

It means that human beings come with different 'designs' of brain, for different purposes.  Brains that have their own unique strengths.
Brains that are not broken, in need of fixing, something to be pitied or prayed for
Brains that are genuinely and permanently different.

This is a shame for the pharmaceutical industry, of course, who are hoping to make a fortune out of 'curing' autistic people. But I can't help them, there.  One assumes they won't be trying to find a pill to cure people of being female, or of a particular ethnicity.  Same principle. 

I get a lot of very upset people at this point, who say, "...but my child is really suffering.  Are you telling me that they do not need a cure? You unempathetic clueless monster of a professional!". (Or words to that general effect...)

No, I haven't said, "Your child must suffer", at all.  Nor have I said, "You must suffer as parents".  The last thing I want is any suffering.  At all.  For anyone.

The work I and other autistic professionals do is largely around prevention of suffering for everyone. 

But it doesn't involve a cure for autism.

Let me explain.

Most autistic people start off just autistic.  A brain design with considerable strengths.  Generalising (because each person is different):  Honesty, integrity, morality, diligence, passionate about learning.  Amazing senses that can detect the tiniest changes, e.g. food going bad, the first sniff of smoke from a fire.

Are we agreed so far that this is a good thing for society, to have nearly two million people in the UK who are determined to be fair and moral?  People who are life's extreme specialists?  People who are able to detect danger before others can?

OK.  Right now, you're in the zone of autism acceptance and understanding.  That's our starting point.  I know there will be a few who are desperate to say, "...but...!"   Just read on...

Autism is a sensory processing difference.  Our brains take in too much information, all at once, and cannot filter it out properly.  It makes us hyper-aware of things that others can 'tune out'.  It is wonderful in quiet places, in nature, in our specialist hobbies and in good environments.  It gets exhausting in busy, noisy places where we cannot see or hear properly.  We struggle to process social information from others - their body language, their face expressions...and work out what it means fast enough.  It leads to awful misunderstandings and social isolation.  Others do not understand that we literally cannot see those signals.  We need to keep our brains at the right internal operating temperature. So, we really appreciate advance info on environment and social scenarios.  And we appreciate a quiet space to let our brain cool down again. And we appreciate clear, straightforward language, so we do not visualise the wrong thing or misinterpret things.  A good autism-friendly environment helps.  So does good understanding of our communication differences.  And our passionate interests in subjects and specialist collections of info, data or things. Those solve these difficulties without the need for 'cure'.  Easy, cheap, simple.

That's autism.  That is what is in the diagnostic list, summarised.  Nothing else.

If you put anyone, autistic or not, into overwhelming, baffling, sensory-painful, lonely situations often enough... they will start to have anxiety or depression.  If you add in direct bullying, ostracism and abusive 'therapies' designed to prevent us from looking autistic, then those mental health situations get worse and worse.  Those are co-occurring mental health situations caused by society's refusal to assist us, or by therapists telling us or showing us that autism is shameful...or by predators targeting us.  Those are not autism itself. 

Now, the difficulty is that some children (whether autistic or not) will also have other co-occurring things. 

A small number will have a low IQ that means they can really struggle with learning vital things.  The low IQ isn't autism.

A small number will have speech and language difficulties that mean they may take years to talk.  The speech and language difficulty isn't autism.  See the DSM V diagnostic manual.  Speech & language difficulties are a separate thing.

A small number will have epilepsy that involves major and life-threatening seizures.   Those seizures are not autism.

A small number will have an angry and confrontational personality.  That isn't autism.  30% of autistic people experience brain events that can look like a tantrum, but there are distinct differences.  Those autistic 'meltdowns' are not trying to get attention or control deliberately, and they do not stop when the child is given something.  They are more like an internal epileptic event, causing wild behaviour and sometimes random swearing for an hour or two.  The child is then exhausted and disorientated afterwards.  Not a tantrum.  70% of us do not have those meltdowns at all, it appears. 

A small number will have a child who cannot manage toileting for many years, or at all.   That isn't part of an autism diagnosis either. 

Parents will arrive with a child with a low IQ, no speech, toileting difficulties, life-threatening epileptic incidents, perhaps an angry personality, and say, "I want this autism cured". 

It's not autism that needs the cure, there.  None of those things are caused by autism

Certainly there's a lot that needs to happen to support that child, and their family.  Definitely.  Curing autism won't solve any of that though, because all that stuff would still be there. 

If we are to have a sensible, respectful discussion with the two million autistic people in the UK, we need to know what it is.  And what it is not.

We need to know that most autistic people do not wish for a cure for their autism.  Some do. That's a personal choice I respect, though I suspect it comes from a place of loneliness and pain caused by society. 

I'd quite like society to be cured of what it does to autistic people.

So, when you meet an autistic person, please try to avoid immediately directing us to your  mental health team.  It's not the best possible way to start a relationship.  We are a mostly lovely, honourable group of people who have immense integrity and so much to bring to your life. 

Photo credit Gian Paulo Chiesi

Tuesday 23 August 2016

Successful Meetings with Autistic Experts

I'm going to generalise.  Always ask what works.  But, generalising...

Autistic people won't meet you unless we can:

a) Guess what the sensory environment is going to be like for us, e.g. photos, advance visit
b) Know when the start and finish times of a meeting are, with some accuracy
c) Know where the emergency escape exit/quiet space is, and how to get there fast
d) Know whether there are social hazards in that meeting that we need to plan for.

None of this is 'control'.  It's about balancing the input and output of a brain that takes in too much information from the world around us.  And needs to cool down from time to time.  Literally.  That's it.  If I'm meeting autistic people, I'm pretty safe from brain overheating, as we don't often put one another in difficulties.  When meeting non-autistic people, my goodness it can be random and scary for my brain design.

Great places to meet me:  Outside, walking alongside me.  Or sitting on a park bench somewhere quietly public.   Or inside, in a quiet room with quiet natural lighting, away from intense smells, noises etc .  Letting me pick which seat allows me to hear and see best.

Really really bad places to meet me:   Internal rooms with fluorescent lighting.   Noisy cafes and busy public places.  Want to see what that's like?  Got two minutes and sound on your device?  https://vimeo.com/52193530  Put the sound right up.  Brace yourself.  Is the child just misbehaving?  Nor do I.

Best example?  Christian charity.  Wanted to know where to meet me.  What worked.  What start time.  What finish time.  What refreshments would I like.  What did I want on the agenda.  Friendly, cheerful, spoke to me directly.  Happens a lot.

Big warning signs of trouble ahead: 
Getting their secretary to talk to me, weeks later than my request, because they are too important..or too uncertain about encountering me.  That tells me how scared I'm going to be, meeting them.  If I'm scared, I won't meet them at all.

Making me do all the travelling.   As a disabled person (multiple disabilities including arthritis, faceblindness, recovery from cancer treatment) this is exhausting and demoralising.  It tells me how seriously they take their part in 'going half way'.  I'll travel to places I know and people I know and trust.  A stranger in a strange place?  Wow, no.

Being vague about timings.  This tells me that they don't understand how hot autistic brains get, and how much planning we have to put into getting the wiring cool at the start...and cooled down after each meeting.

Being vague about social content, e.g. introducing someone who is going to be confrontational, touchy-feely, negative about autism.  It gets mighty scary, mighty fast.

Insisting on it being in their territory, unless there's a really good reason.  And then, not providing details on address, photos of location and the room I'll be in.  I can't begin to imagine the sensory load on me.  I can't then guarantee that my brain stays in operating temperature range.  If it doesn't, it will shut down.  Literally.  Physically.  Then I cannot communicate and am stuck in a place with someone clueless.  Dangerous, painful, exhausting, scary.

It's so easy to get it right.  Ask us what helps, and do what you say.  Make the information accurate.  Respect it if we say, "blimey, brain hot - got to go".  Or words to that effect.  Don't misinterpret over-hot brain stuff for 'anger'.  Keep it respectful and cheerful.  Once we know you can be trusted, it's so wonderful.

You will then have fantastic, timely, honest, excellent information, and a new friend.

Friday 19 August 2016

Church: What does 'Autism Accessible/Friendly" mean?

I'm sometimes asked what we mean, when we say a church is 'autism friendly'.

It's a difficult one to answer.

It was an honour to write the main guidelines for the Church of England, in collaboration with the main charities and many fine people.  They can be found at http://www.oxford.anglican.org/wp-content/uploads/2013/01/autism_guidelines.pdf  on the Diocese of Oxford's website.

There's a Top Ten Tips page in there for a quick run-through.

We have seen a tripling of 'autism-friendly' churches in the last two years.  I'm counting the ones who have gone to the CofE website A Church Near You, and ticked the box for autism friendliness.  This is of course no guarantee, but it's a start. If yours hasn't, have a think about the info above. 

It's 1 in 30 of your parishioners.  We're just as likely to be Christians as anyone else, research shows.  We know that churches which are autism-friendly grow faster than other churches.  The simple things that help us will help everyone else too.

But there's something else that is increasingly important.  Something that defines whether we feel welcome, or not.

Autism isn't a disease, or a mental health condition.  It is part of human diversity.  Even the medical journal, The Lancet, agrees on this. 

God built us this way.  It comes with strengths, as well as challenges in today's busy, noisy, over-bright world. 

It's a sensory processing and social processing difference.  Genuinely different.  Most of us do not have 'meltdowns'.  Research shows us to be generally more moral than others, more honest, more dedicated to our passionate interests. Our senses can detect things that others cannot.  Ours can be a wonderful inner world, and we socialise very nicely with other autistic people.  We often haven't a clue what non-autistic people are doing with their wildly variable social signalling...but there again, they don't know what we're doing either.  We are different.  Both systems are OK.  We can't see faces very well.  That does not mean that we are uncaring.

If you look at our skill sets, arguably we helped build many of the churches and cathedrals.  We might well be running the services, singing in the choir, playing the organ.  Praying with people. 

Here's an illustration of a myth.  "We can't have autistic people in church because they are too disruptive".  Arguably, it's autistic people building and running the churches, with others.  A shame if we can build it, but are not able to worship in it.

An autism-friendly church will try to ensure that prayer-for-cure doesn't happen without our consent.  It's not a disease.  

Churches could instead find out about sensory needs, and see what simple, cost-effective things can be done to help.  Sunglasses?  Noise cancelling headphones?  Quiet space to retreat to?  Churches could find out how it feels to sit on your own each week, and see if we can be linked to friendly people to sit with.

Because of the myths, many assume that it's a behavioural condition involving us just not understanding how to behave.  Not so.  We may behave and respond differently, because we are genuinely different. 

Some churches give a lot of money to places that use abusive 'therapies'.  These get us to behave as if we are not autistic.  That is the same as 'gay cure therapies'.  It's not appropriate.

Look for charities that have autistic people leading them.  Autistic people talking about their work, for themselves, or displaying their work for themselves.  Not being used as 'inspiration' as they sit there staring passively at a camera. 

Watch out for places claiming that there is a "real person" hidden behind the autism.  We're already real.  It'd be like claiming there was a 'real person' hidden behind the colour of someone's skin.  Insulting, not enabling.  Well, it is.

And, in your church, find out our strengths.  Include us as friends, partners, true members of the church. 

Get really good advice.  There's lots out there.  Ask actual autistic people.  We can speak/communicate.  Some of us are professionals, working nationally and internationally.  Look out for the #actuallyautistic hashtag on Twitter.  Read some blogs by autistic leaders.  Get the Neurotribes book by Steve Silberman.  It gives the history of how the myths emerged.

Get to know us.  Met one autistic person?  Go meet some more.  It's worth it.

Thank you for listening, and caring.

Sunday 7 August 2016

On needing us to be angry


What do those words mean, to you?
Whose image comes to mind, when you think of each one?
What characteristics does that person have?  What do they look like?  Are they old, young?  Are they white, a person of colour?  Are they straight, gay, bisexual, trans, asexual?  Are they fit and able, disabled, different?  Are they of some particular faith, or none?

Who deserves love?

Who deserves their life to be honoured and respected?

Our unconscious biases sometimes betray us. 

With autism, there's a lot of bias.  Unconscious or otherwise.

For too many years, a few professionals urged parents to portray autism as disaster.  That way, they would get all the services they needed.  Allegedly.

But, the consequences of that had ramifications for us all.

The quiet, well behaved ones.  The gentle, caring ones.  The wise, noble ones.  The creative, artistic ones.  The ones who are parents. The ones who are in deeply loving relationships.  Those who are church leaders.  Those who are lawyers, accountants, craftspeople, musicians, choir leaders, spiritual directors.  So many....so many all told that they could only be identical to the worst example.  All.  Always.

The portrayal of all autism as 'anger' , as inauthentic, as non-empathetic, has created a terrible inauthenticity of its own.  A terrible legacy.

Now, we are often only allowed to be 'angry'.
Or frustrated. 
Also, vengeful.  We have to be vengeful.  Apparently.
Let's not forget destructive and manipulative.  We have to be those things, it seems.  Very important. Allegedly.

That is the role given to us.  We cannot be ourselves.  We have to be the thing-that-others-say.

I want to be myself, not a parody of me as described by people who have met me for seconds, or not at all.

And if we are actually angry about the same things as others are angry about...well, that's a sign of our 'challenging behaviour'.  Others can be angry, we can only be 'challenging'.  Double standards.

It becomes a desperation by some to prove the point, too.  A desperation to pick about in our words and phrases, our demeanour and presentation.  Anything, anything at all that shows that 'people were right'. 

"Ooo look, we found one out of two million who did something illegal.  That proves it!"   "I met an autistic person and...gosh....they seemed so sullen, they didn't look me in the eye....must be monsters....run!!  Run whilst you still can!!!  They'll destroy all!!"   <cue dramatic music and possible sounds of thunder in the distance>

We can now stop to look for this vision of the two million people in the UK all rampaging over the hillside in your direction.  Well presumably that's what people imagine is about to happen.

Any sign of us yet?
What about now?

Anything yet? <peers out of the window>

.....time passes.....tumbleweed blows across the scene.....autistic people continue with their very ordinary but different lives...loving, caring, praying, sharing...

There is no angry destructive costly mob of two million 'angry autistic people'. 
It was a nonsense.   Sorry, but it was.

I've lost count of how many times the proposers of this constant-anger have portrayed me as angry, when I am not.  As vengeful, when I am not.  As frustrated, when I am not.  As nasty, when I am not.  As 'about to sue', when no such thing ever happens.  Sheer desperation.  Or projection of inner fears.  One of the two.  Mistaking the way I communicate for something it is not, perhaps.  Perhaps it's because it's easier to keep portraying people like me as 'the problem' rather than admit that really bad things have happened to us.

I keep loving, and praying.  I keep hoping for others' lives to be filled with good things.  For them to find love, and peace, and caring.  For them to share good friendships of their choosing, and find the healing their lives may need for any crisis that arises.

And I'll keep loving and praying, sharing, teaching, advising.  That, my friends, is the outcome of encounter with me.

People need to own their own fears, and not project them onto us.

Get to know autistic people.  Get to meet us.   We are not something to be afraid of.

You are OK
We are OK
And it's OK for us to be different to one another.
Some of us need support.  I do.
I work hard to ensure that families, carers and autistic people get that support, that good training, those good and worthwhile lives.  In honour.  In love.  In respect.

Thank you for listening.

Tuesday 2 August 2016

"That's Not Real Autism!" How to change the thinking.

How did we get the bad myths about autism?

Steve Silberman in his book Neurotribes uncovers a lot of the hidden history of how autism was given negative comments and wrong assumptions.  http://stevesilberman.com/book/neurotribes/

Well worth a read.

Meantime, here's a bit of autism reality.  Take a look at this photo. It shows a crowd of people of all kinds.  Old, young, male, female, different ethnicities, different abilities...hundreds of people.

Imagine they are all autistic.  OK, arguably not many of us like crowds...but ...

How many are young boys and showing distress behaviour?

You see, if researchers collect together lots of young boys who are showing a lot of distress behaviour, and call that 'autism'....then do their research about 'autism' based on that, they have proved precisely nothing.  Well nothing apart from what autism may look like in young boys with severe distress behaviours.

Autism is not a young boy with distress behaviours.
Autism is a sensory processing condition, part of the natural diversity of humans. It comes with some challenges in seeing people's body language and face expressions fast enough...and in needing certainty and routine.  But, it comes with a brain designed to detect detail and be a specialist.  A brain designed to seek safety and accuracy, and keep others alive with those skills.  A brain designed to tell the truth and to be unafraid of social rank. A brain in so many cases capable of amazing creativity, love, friendship, caring.  New ideas, artistry, craft skills, musical composition, poetry, literature...

I know and work with so many autistic people with that range of things.  Not all, no.  But there again, that is true for any group in society.  Not all women will have those things. Not all men.  Not all people with size nine feet.  Not all people who are 5 ft 7.

Yes, autism can look like someone who has extreme distress behaviours due to sensory and social pain/exhaustion.   If you put anyone else in situations where they are distressed, they'll show distress behaviour too.  That's not 'autism', that's pain/exhaustion.

Autism also looks like me, a middle aged mum and businesswoman.
Perhaps autism looks like John, an older man who is a round the world sailor.
Perhaps autism looks like Sam, a quiet and well behaved young girl.
Perhaps autism looks like Jas, a young man in his twenties who is studying to be a Doctor
Perhaps autism looks like Mia, a faith leader caring for her flock.

Autism looks like a million...maybe two million...different individuals in the UK.  Each with their own personality, their own strengths, their own set of sensory and social and rule-based needs.  70% won't ever show a 'meltdown', but experience quiet 'shutdowns' instead.

Somehow, 100% of us got portrayed as young boys with extreme distress behaviour.   It's just bizarre.  If we are not a young boy with distress behaviours evident, so many of us are told we are not 'real autism'.   Well of course we are. We are as real as that young man.  "People like Ann have no idea what Real Autism Parents go through".  Yes, I do.

I have no idea what researchers have proven by studying young boys with such behaviours, mostly to the exclusion of the other 99% of us.  But it hasn't been anything very handy so far, I'd venture to say.  As a mum of a son who is autistic,  I can tell you a fair bit about such behaviours. It was lively. Chris and I laugh about it now. And he grew up.  In his 20s, he did his degree in Psychology & Counselling, has a past playing national level rugby, and is now an autism consultant and national speaker/trainer. Check out his site at www.chrismemmott.com   Fantastic, insightful specialist in autism.  Does a lot of work also with parent groups who want to understand how to help their own young people.  And a lot alongside us at Autism Oxford UK as part of that marvellous training team of autistic professionals.  Are we proud of him?  Oh yes.

But, for 20 or so years, we've been told autism is a disaster and we must focus only on that alleged disaster.  Because that will help the most people who really need it.   Did it?

We still have 85% of autistic people unemployed, because of the damaging myths.
We still have autistic people dying horribly young, because of the damaging myths... and society's continual refusal to help meet our (often simple) needs.
We still have so many autistic people without a home, living on the streets, absolutely crushed by the weight of this expectation-of-negativity.
So many autistic people are victims of crime, fraud, assault.  Living in terrible fear of other people because of this.  But so often treated as if they are the criminals.

What a waste of that majority.   The quiet, ordinary, everyday, quirky, kind, faithful autistic people who have always been part of our world.

Children who are distressed absolutely do need excellent, fast, appropriate help - for them and for their parents. Totally agree with that.


We need research that moves away from stereotypes, and starts looking for the positives. Where are the ordinary autistic people, living those quiet lives, and what are they bringing to society?

On those positives, we can help rebuild the lives and confidence of all of our autistic people.  Including the lives and confidence of those fine young men with the distress behaviours.  Because goodness me, they deserve better than the future awaiting them at present. 

We all do.

Meantime, I and so many fine others like me continue to work towards that world where families get the help and support they need. Where autistic people can access schools, doctors, hospitals, supermarkets, without pain and exhaustion.  Where schools do not have to turn requests for assistance into epic battles with the families and authorities.  Where employers get fabulous and dedicated autistic people working for and with them. 
Where all autistic people can bring the best of our skills and insights, the best of our personalities and love.  Whether verbal or not.  Whether of a high IQ or not. 
A world where autistic people are free to choose a faith, or not, and join in with community and society in safety and with mutual respect for one another.

And where we can be ourselves without being told we are not 'real autism'.  I'd say that thinking dishonours and disadvantages us all.  All autistic people are real autism.

So, that's the world I want for each young person, each adult.  It's a big ask, but we can work together for that future, together.